What is Frontotemporal Dementia?
July 3, 2009 by Holly
In my last post I told you about my husband, Dave, being diagnosed 2 years ago with Frontotemporal Dementia (FTD)at age 57. This form of dementia is the 2nd most common one under the age of 65, yet there is little written about it. In fact it was difficult to find many people blogging about it.
In FTD, the frontal and temporal (side) lobes of the brain are affected initially. The frontal lobe is responsible for our personality, judgment and emotions. In Dave’s case, he has become withdrawn and often has a vacant or blank look on his face. He has lost his initiative to carve birds-his favourite hobby for over 35 years, and is highly sensitive to noise-he winces with tears when he hears higher pitched sounds like babies crying, sirens and even most cell phone tones. I have noticed that Dave has certain routines throughout the week, which are tough to change. For instance, Monday is ‘cutting the lawn’ day-regardless of the weather, Tuesday is ‘gym’ day, Wednesday is a ‘garbage dump’ day (and it has to be a certain dump) and so on. Dave’s problem-solving and common sense is becoming more limited and I can tell you that this area really tests my patience! A good example was last night when our young springer spaniel, who has poor bladder control, got excited and peed when a neighbour came to the front door. Dave looked at the puddle and even stepped over it, without thinking about getting a towel to wipe it up. Meanwhile, our spaniel walked through it and I could see her wet paw prints all over the house.
In addition to these frontal lobe changes, Dave has significant damage to his both of his temporal lobes. It controls how he understands and recognizes words, faces and their meanings. That is why grocery lists and reading a novel is so difficult for him and why he doesn’t recognize many people-even if they were our neighbours for years, or cousins he has known since childhood. If we are in a group of people, Dave says very little because he has problems finding the right words and when he speaks, he will use many words to describe the word that he can’t find. That symptom is referred to as ‘circumlocution’.
As the dementia progresses-it varies for each person, but is similar to Alzheimer’s rate: 5-8 years from time of diagnosis-other symptoms begin to appear. Over the past year, Dave’s personal hygiene is becoming more of a problem. He would wear the same pants for 7 days straight and shower every 5 days, if I didn’t remind him otherwise. He is losing empathy and doesn’t understand why I would insist that he showers before coming to bed. His leg muscles are weaker and he is becoming shorter of breath, even though he exercises every day.
Research has shown that Frontotemporal dementia has a genetic component; it has something to do with tau protein production and chromosome 17. There is genetic testing for our 2 grown children, but I don’t have the inner strength to deal with that yet. Interestingly, chromosome 17 is the same one for Parkinson and the reason why 10% of patients with FTD show some of the same symptoms. The classic signs of Parkinson-intention hand tremors and pill rolling with the fingers-showed up in Dave within the past year. This is one of the reason why he has lost interest in his duck carving and painting, which requires fine and accurate detailing.
I think I have covered most of the general information that I have read and hopefully, you have a better idea of why people with dementia speak and act the way they do . In my following posts, I want to start sharing the lessons and tips that I have found to enrich our life-despite dementia.
deedee on Sat, 4th Jul 2009 3:04 am
I found your blog on GoogleAlerts. My mother was diagnosed at age 58. I have bookmarked your blog, and appreciate your words. (Great description, too. I might borrow some of it to help explain it to my relatives.)
Peter Moore on Sat, 4th Jul 2009 7:23 am
Hi Hollyburne,
My 62 year old wife, Doreen, has Primary Progressive Aphasia, which is the communication variant of FTD.
I am the co-moderator of http://www.ftdsupportforum.com which is a worldwide support forum for FTD sufferers and carers.
We have over 1800 members from around the world.
Please feel free to check it out!
Peter
hollyeburne on Sat, 4th Jul 2009 12:19 pm
Hi Deedee,
I am honoured that my blog will help you and your family with this relatively unknown condition. How is your Mom doing? How are you doing? One of my blogs will discuss how our 2 children, Kyle, 27 and Amy,25, are doing.
All the best and thank you for bookmarking my blog.
Holly
hollyeburne on Sat, 4th Jul 2009 12:27 pm
Hi Peter,
Thank you for commenting on my blog and also for sending along the link to join the supportforum. It is comforting to be in touch with other caregivers since FTD isn’t well known in our area and there seems to be little support for caregivers.
I tried to register with my name but they kept telling me that my username was invalid. Any other suggestions? I will try again in a few minutes because it will help to be with other people in similar situations. As soon as I am successful, then I have a couple of people that I want to forward this on to.
How is your wife doing and how are you managing?
Warmly, Holly
Peter Moore on Sat, 4th Jul 2009 1:52 pm
Hi Holly,
It is possible that someone else has the same username! Please keep trying, if you have more problems, let me know, and I will assist,
FAQ’s on the forum should also help.
Regards,
Peter
hollyeburne on Sat, 4th Jul 2009 2:36 pm
Thank you Peter. I was successful and I am filling in my profile.
Warmly
Holly
deedee on Mon, 6th Jul 2009 7:52 pm
I am okay…my blog is very private in that I haven’t shown it to my family and friends. Just my sister. I don’t believe my own brother has ever seen it. I just have such sad entries and alot of my anger about the disease has been chronicled in the entries. Not a very uplifting blog, but I write in it if anything to help others who are going through it understand the ups and downs. http://www.irenetdjftd.blogspot.com
hollyeburne on Mon, 6th Jul 2009 8:50 pm
Hi Deedee,
I read some of your posts and commented on one of them. I can feel your pain because my Mom passed away at 60 from cancer and the hole in my life was huge when she died. Like you, I was grateful for the time to say good-bye.
It sounds like your Mom is at a tough stage and I know that will be coming for us in the next couple of years. I keep focusing on today and let tomorrow comes when it does.
Warmly,
Holly
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